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my metaport is finally gone! woooo!!! at first i welcomed having one, but now i'm glad that it's finally out of my body. i probably wouldn't have minded keeping it a bit longer if it wasn't giving me strange sharp pains every so often.
i want to write more, but i feel pretty nauseous from post-surgery pain meds...
so here's an old post from my facebook notes -
so it seems i will be stuck at north shore for quite a bit longer. tomorrow i will have to have what doctors call the "chamberlain procedure." basically they're gonna slice me open in my chest (unfortunately in my tattoo area) and try to remove better tissue samples. it turns out that harvard came up with the same results in one day that it took north shore's pathology department a week to figure out - that the tissue samples from my biopsy were not enough to properly diagnose me. so i'm back to square one with not knowing whether i have hodgkins or not. sooooooo....i dunno....i think my brain got fried after my last fever this afternoon.....
sorry for not posting anything in the last few days. i haven't been taking to my best friend's death very well and i'm still in disbelief. i still think that jess is going to call me any time now and ask me how i'm doing. what upsets me most is that i didn't get to share finally reaching remission with her. but i guess she's watching over me, wherever she may be.
tomorrow i will be having surgery to finally remove my metaport. jess had one too which is what led to so many complications to her health recently. when i started to feel strange pains in the area of my metaport, i would tell jess that they were sympathy pains because her port had gotten infected which is why she was in and out of the hospital so much in the past few months. i can't wait to get my metaport out. not only do i still feel strange pain there sometimes, but it always reminds me of jess.
and for those of you who have no idea what a metaport looks like from the outside, here are some pics of mine (it's the weird round lumpy thing on the left side of my chest) -
today was my first day of radiation therapy and i'm already feeling the side effects. i feel absolutely lethargic right now and could probably fall asleep before i finish writing this sent...zzzz....
ok ok, i'm still awake, but not by much.
this morning was pretty crazy. i got around 10 phone calls before noon all from nurses and doctors explaining to me what the rest of my week will be looking like and confirming my gazillion appointments. not only do i have radiation every day this week, but i'm finally getting my metaport out on thursday. woot!
but blah blah blah about my morning. i should be talking about my radiation experience. so what was it like? well, i had to go through the whole lying on my back with my arms raised flat behind my head and my bare chest hanging out for all the male technicians to see again in a cold, cold room. then there's the crazy radiation machine that hovers and moves in semicircles around me shooting its invisible rays. i also got some weird taste in the back of my throat...can't really describe what it's like except that it's similar to the metallic taste you get in your mouth when you get injected with radioactive isotopes for a catscan. the whole process actually takes only 7-10 minutes and it really does feel that short. i was up and out in no time but a whole lot weaker and slightly dizzy.
i'd write more, but i'm seriously about to snooze out this time. zzzz....
yesterday was a pretty crazy day which is why i didn't get to post anything. first off i had 2 doctors appointments. one at 9am in which i waited 3 hours to get my metaport checked out. second, i decided to go out later that night and had an interesting time. but before i get to that, let me start off with the metaport problem.
i've been experiencing strange sharp and stabbing pains in my metaport area and just wanted to make sure i didn't have an infection or something. it turns out i might have busted one of the sutures from the surgery and my doc told me that i just need to wait the pain out. it doesn't hurt so bad now, but i'm still afraid of moving my left arm the wrong way which is what caused the pain the first place.
i also saw my radiation oncologist at 1pm so they could once again take films of my chest before they start radiation on me next week. it's a pretty embarrassing procedure which makes me believe that radiation will be too. basically i lie down flat on my back with my arms raised flat backwards and my hospital gown opened from the waist up with my bare chest exposed. it makes me feel really vulnerable and slightly uncomfortable especially when there is a male technician around. i realized though this is what women with breast cancer must go through as well. at least i'll only have to be in that weird position for 15 minutes long compared to sitting in a chair for 5 hours getting chemo.
so the second part of my story begins with me trying to enjoy myself a little before i'm once again knocked out by radiation. i'm staying in brooklyn just for the weekend cause queens is making me seriuosly depressed. i went out to the winkel and balktick's cotillion event at the glasslands which was pretty friggin awesome. it was my first time at the space and i really enjoyed the setup. i met some really awesome people too (finally! i've been super socially awkward lately, but slowly getting over it). but when meeting knew people there always comes a lot of issues especially when it comes to personal space.
i generally have to stay away from weaving through large crowds so i spend most of my time cooped up in a corner where i know i won't be at risk of being near anyone who might be sick or could bump into my metaport. i also have to tell people that they need to talk a distance from me because i have a weak immune system and cannot afford to catch their germs and get sick. at that point, i usually have to spill the beans that i have cancer and that i'm not a hypochondriac in order to not make people feel awkward. people seem to be more understanding when i'm just bluntly up front.
my metaport is coming out next week so hopefully some of these weird space issues can be resolved. bah...ok...i think i'm writing too much so i'll stop right here.
here is my day, short and sweet - it sucked. today is a down day...it happens.
but here it is, like i promised, the beginning of my story about cancer.
this note is not really to myself. it is more like a note to all of those who might be wondering what the hell has happened to me. it was only 2 weeks ago that i had realized that the physical and mental decline that i have been experiencing in the past 2 1/2 months was a little more serious than i had thought. since this realization, i've seen my doctor 3 times in the past 2 weeks, landed myself in the ER twice, and have a list of specialists i need to see. i have taken so many blood tests that i feel that my anemia is almost being caused by so much blood loss, but even after test after test, doctors still have not received any conclusive results. what is wrong with me? i don't know. my symptoms keep on growing and the extent as to how long i have felt like this is puzzling my doctors. i'm not contagious. whatever i have is solely in me. to all those that i've tried to make plans with to hang out, i apologize for constantly having to cancel. there are times when i feel fine and think that i will make it, only to realize that after walking half a block i am already feeling out of breathe and dizzy. i miss everyone and wish that i could see you all again soon.
the good:
i have goiter! not thyroid cancer! woooooot! not that goiter is necessarily a good thing, but hell, it's better than cancer. from what i understand i'm not getting enough salt in my diet. i guess that means i can eat all the bacon i like guilt free. or at least till i get a heart attack.
the bad:i thought my visit to the doc today would be as simple as a metaport flush. and of course it wasn't. my doc came into the room i was waiting in with a pretty concerned face and i knew that shit was going to be good.
since monday evening i've been experiencing really painful, sharp pains during random moments throughout the day around my metaport area. dr. donnelly was poking around it during my check up and it seems pretty tender. he says it's possible that i might have an infection and if at any point throughout today and tomorrow i have the chills, a fever, or night sweats, to call him immediately. so on friday i've been scheduled to go back to the last place i wanted to be - northshore hospital, in order to get some testing done on my port.
as if my bad news wasn't bad enough, i just found out that my best friend, jess, also arrived back in the ER on my birthday. her metaport has been infected for a while and she's been in and out of the hospital for weeks now. i spoke with her today and told her that i might be feeling some sympathy pains for her considering that its possible now that i might have an infection as well. i just hope she's ok and that we both get better soon.
my birthday:two words - deliciously sexy! if you went to my birthday dinner at monkeytown you'd understand. thanks for all those who came out. as for those of you who didn't come because the inauguration was way cooler, i totally understand because i've accepted the fact that obama is way cooler than me. way way cooler :P
oh and i know i said i was going to post the beginning of my facebook notes about cancer here today, but i decided i wrote too much already so i'll do that tomorrow. here are some of my birthday photos from sarah -
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